Update

[Guest guest]

Well it's been awhile since I updated our sitation so here it is. We went back

to Cincy and had a sleep study and MRI sleep study and saw the orthopedist. The

results from the sleep study indicated severe sleep apnea. I honestly suspected

sleep apnea...but didn't expect it to be severe. The docs will meet the 24th of

this month to discuss treatment options. I am thinking cpap...however...am

concerned as to how this can work for us under the circumstances. 's

sinuses are almost always blocked and we've tried so many different meds and

they either don't help or help but cause him other problems. He has had his

tonsils and adenoids removed. Doc mentioned that maybe the adenoids have grown

back. Also...Joy... did wonderfully. You know how worried I was. He

said he was going to be a man and he was. Hubby stayed all night with

and he reported that all went well. We both were extremely worried about the

sleep study because of sensory issues with head and an extreme dislike of

sticky's and leads.

Now...for the orthopedist. 's femurs rotate outward from the hips and

there's nothing they can do except cut femurs in half, straighten legs, plate

and bolt femurs, and at least a year to heal. I was told that he will have

arthritis eventually if not already. They also told me that this happened in

utero and that it wasn't as noticeable until he got older. I'm not sure how it

happened but feel responsible. Feel like perhaps aggressive PT in early years

may have made a difference. I was approached recently by a person whose son had

this surgery due to toeing in. He developed a staph infection and has had many

problems as a result. She tells me she would not recommend the surgery. We had

to buy a wheelchair because standing or walking for even the shortest lengths

of time can result in a sit-down. can run and walk but it's sorta like

a sprint thing and then he will sit anywhere he can and complains of back and

leg pain. Docs asked several times if he had pain other than when walking or

standing and I tell them no...he doesn't indicate that he does. Evidently they

were thinking of referring him to an arthritis doc. I don't know. Orthopedist

was a surgeon so after we indicated that surgery was not an option she was gone

to see other patients. The nurse answered most of my questions. needs

to get the xtra weight off and that will help a great deal. How you gonna do

that without walking or running? She recommended pain management, walking and

running as tolerated, aquatic therapy, yoga. Problem is that we are 45 minutes

away from suggested therapies or either they're not available period. We're

always having a dilemma.

I don't really want to get onto the subject of school just now....but. We're

still self-contained. School scheduled an IEP then cancelled. Have no idea

where it's gonna go but do know that depending... may or may not be

going back in the fall. This would be sad because socialization is just as

important as academics. I shouldn't have to choose between the two.

Socialization at school just now is not appropriate either. has made

friends but interactions are not age appropriate. The kids treat him as if he

were a 'cutie pie' and he has regressed to hugging, kissing, acting the clown,

etc. He tells me that some of the girls want to kiss him. It breaks my heart.

So...that's it for now. More lurking than posting.

Barb mom to (13ds) and Tyler (10nds)